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Tuesday, May 25, 2010

The Long Update

So I slacked a little, but I have reasons! I have had good days, but as always more bad days. Last week Andrew and I had the opportunity to escape the real world for just a little. My grandparents (my fathers side) live in South Carolina. Well my grandmother's sister and her husband (great aunt and uncle) always go on little vacations. They both have very extreme cases of polio so it helps them to get away as well. Well my grandparents always go with them on their trips to help them because it is so hard for them to get around. Well guess where they went? GULF SHORES! Just 2 1/2 hours away from us! So Andrew and I drove down on the 17th and came back on the 20th. We enjoyed our time. So Andrew and I got home on Thursday. Thursday felt so so....well Friday was AWFUL!

Saturday - Andrew and I were just laying around resting at his house. He got a new game so I was watching him play. Well all of a sudden Crohn's decided to make its grand appearance. I got nauseated to the point of pass out again. I can't explain...nauseous almost doesn't serve justice to what I need to describe. It is to the point I can't move or I feel like I'm going to go out...well I pretty much crawled from the couch to Andrew's bed. I was trying to tough it out because I didn't want him to have to see me so bad again. He sees it all the time and it hurts him so bad!! Well, finally I started BAWLING! It made it worse to cry also to talk....well I finally managed to mumble his name and he came over and held me and got me some phenergan. Well I took it and he rubbed my head and held me. I SLEPT ALL DAY FRIDAY AND INTO SATURDAY! It was RIDICULOUS! I woke up the next day just feeling sick but not as bad as before.

Ok...so now I have to skip a little ahead. That was Friday which was the 21st. Well Monday as you all know were two BIG appointments. I am still having issues with EVERYTHING! Bowel movements....still bleeding...not with every single one, but still am. The pain along with them...still there! So my first appointment was a check up for the fissure (internal). This appointment was going to be with Dr. Rider (my peri-rectal surgeon). The next appointment Monday would be with Dr. Rodriguez (my heart and my gastroenterologist). My appointment with him was most important. See I have finished my "induction" treatments (my first three treatments). After your first three you have to have an appointment to talk everything through figure out everything and put it all together. Get lots of blood work and just have lots of communication between the doctor and patient (myself).

Dr. Rider appointment - 11:45

Before I tell the story I will say that I am to the point of anger with him right now. I think Dr. Rodriguez was as well. (or maybe that is just me in my dream world...haha...maybe I just want him to be on my side)

Andrew and I get there and go back. Well he comes in. He tells me I look good (I get tired of people telling me that...I haven't gained much weight and appearances are NOTHING with Crohn's). Well he asked about everything. I told him a lot. Key things - bowel movements = EXCRUCIATING PAIN bleeding = still...not ALL the time, but still. That is most he needs to know. Well he took me into the exam room.

Yet again I'm going to get personal. So he had to use the pediatric anus scope again...let me just say THAT THIS TIME...IT HURT WORSE! He didn't look to much because he could tell it was hurting worse. So once he removed it I said "SO?" and he said "Well...I can't tell much. If it is better I sure can't tell. It definitely isn't worse, but it isn't better either." *Well in my head I'm thinking ok...I can handle this when is surgery lets just get it done because I don't want another FISTULA! I can handle this surgery, but not another fistula surgery* Well...he told me to get dressed and he would meet me back in room. So when we get back, he again told me no better on fissure, but I looked better. (Ok...he is a surgeon...not my doctor...grrrr) So...he told me he wanted to put surgery off and see what my NEXT TREATMENT DID! WE HAVE PUT SURGERY OFF FOR TWOOOOOOOOO MONTHS. IM HURTING, IM BLEEDING....GET IT OVER WITH BECAUSE I DONT WANT A FISTULA!!! Let me explain fissure gets infected and turns into fistula. Well if you have nasty stuff rubbing up against something every bowel movement and I'm immunosuppressed from my treatment, why the junk wouldn't you go ahead and fix it before its worse!!! Ok...I'm just being honest about my feelings...this is MY BLOG! ok....now for cool down. So I looked at him fed up and said "WELL WHAT DO YOU WANT ME TO DO WHEN I POO AND IT HURTS LIKE HECK?" He said "Well I don't like to do this and usually don't but I'm going to prescribe you this steroid/hydrocortisone cream that you insert with a tube...use the entire tube...one tube every night" I just nodded and was ready to see my Dr. Rod. So I go back to see him July 12. Let's pray my fissure doesn't turn into a fistula.

(Also...I was scared before we went...getting graphic again, but when I had my movements, they did not smell normal. They smelled like back with the fistula...very infectious smell. *its a nursing term...haha* Well I told him about it and this was NOT GOOD NEWS...he said something about my small bowel was not absorbing so it was putting off a lot of that would give it a very foul and unpleasant you know. Well umm that isn't good that I'm not absorbing...grrr)

Ok...no time to waste

Dr. Rodriguez appointment 1:00 pm

Get weighed...I had just worked up to like 122...back down to 119. Well...Andrew and I were sitting in the room waiting for my favorite doctor to come in. Now this appointment lasted FOREVER! So I might leave out a lot...I'm sorry. When I told him about the fissure being there STILL FOR TWO MONTHS...I promise to me it looked like he was really aggravated, but it might have been my imagination. I think Dr. Rider is afraid because my case is so severe and I think he is afraid to do surgery with me on these treatments...but I mean I'm going to be on them forever. Anyways...so I talked to Dr. Rodriguez about EVERYTHING! I told him about my bad days...I told him about how my body goes nuts wanting treatments...(the throwing up everything, the dry heaving, the using the bathroom more, no appetite, joints worse...bad stuff...its like my body needs them, BUT am still not showing signs of improvement...BUT STILL I think its good it wants them? right? *positive thinking*) Ok. Well we had talked on phone about increasing my Remicade treatments. He looked at me and said "Allison, I really don't want to take that step YET!" He told me how yet again that would be taking ANOTHER LIFE CHANGING STEP! I am on 5 mg/kg as of now. He said he wanted to stick to this for six months. After that we could re-evaluate and then make the HUGE step to the 10 mg/kg. Yet again the risk of cancer with these so I think he is trying to take safe way. Also...my treatments will be now every 8 weeks. We talked about every 6 weeks because my body wanting so bad. Well he told me that, that would be like changing dosage...so we will wait the six months for that as well.

He told me to let him know if my body started showing signs of needing and if it got to the point of body literally desperate we would take the 6 week step before increasing the dosage. Now for not so fun news. He told me he feared that I was going to also have to go back on pills along with the treatments. He told me that we aren't reaching our goal which is (more better days than bad days). He said we wouldn't just yet, but it would be in the future. I was disappointed and he could tell, but I know that he is trying to get me better so I told him I understood.

He is putting me already back on my Zinc pills (two a day) for my ulcers that keep coming in mouth and for the ones in my entire digestive tract (mouth to anus). Also...he is putting me back on Hycosamine (two a day) for my TERRIBLE intestine cramp ups! *the ones I told you I contract into fetal position because it clamps down and won't unlock*. I told him of the cream Dr. Rider put me on and he just nodded. He then did a physical on my tummy. Everywhere he touched and palpated hurt so bad. He also noticed my tummy swollen and real distended.

Ok...so we talked and he went to his therapist mode because he could tell I was just hurting not only physically but emotionally. He knew and told me to talk to him. Well I looked at Andrew and Andrew was telling me with his eyes to just unload, because he knew I needed it. (Dr. Rodriguez is such an amazing remarkable Christian man who loves what he does, and I thank God for him) So I started on him.

1st - I told him I was still upset because I felt like when I went out people were thinking well "nothing is wrong with her" "she looks fine" and I told him...I was like I hear people say *well you've gained weight* *eww well you've lost weight* I told him it's hard because nobody SEES WHAT I GO THROUGH! I told him "Dr Rod...Crohn's is such an undercover disease" People can't see what I feel or see what I look like in there, but you and I know. He looked at me and said "Allison, what does it matter what other people think? You are sick! I know you are, you know you are, he knows you are, so who cares what they think. You have got to quit putting pressure on yourself" *that made me feel better* then he said...what else!!! LOL ITS LIKE HE KNOWS!

2nd - I feel like a failure! *this one got to him* He said "YOU ARE 21! HOW CAN YOU BE A FAILURE?! He said I'm 50 something I'm 30 years your age...if I was sitting at home doing nothing THAT WOULD BE A FAILURE." Then he asked me why I felt this way. I told him about not working, feeling bad about not working and just feeling like people expected so much more and I felt like I was letting everyone down. Yet again he told me that I put too much pressure on myself and that it didn't matter. He said, "Sweetpea I TOLD YOU it would take TIME. When I said it I meant it. I don't know why its YOU. but it is." *he frowned* He went on to tell me that we are trying to get me better but it was going to be a long road. I was going to have to accept that I was NOT superwoman and I would NEVER BE NORMAL AGAIN! Wow...that makes me feel good typing that...ok I'm saying it again I WILL NEVER BE NORMAL AGAIN...THINGS ARE GOING TO CHANGE...I'M GOING TO HAVE TO REROUTE...AND THAT'S OKAY! *I'm shaking typing that* So I started crying and he just hugged me and you could tell it was helping Andrew as well.

Dr. Rodriguez told me that it was going to take time and he knew that. He told me I was still in denial and I frowned and said really? He nodded and said yeah but there was nothing wrong with it. That he understood why I was and it would take one day at a time. I can't remember if anything else happened...so he was like anything else...and I said YEAH! WHAT ABOUT MY DONATION! LOL. He rolled his eyes and clung to the door like a dreaded thing LOL and said "Well let me goooooo get my check book so I can write you a hundddddred dollar donation for your team!" I squealed really and he laughed and said really then closed the door. Well I had to go the lab to GET BUNCHES OF BLOOD DRAWN...EEEKY! I was mad at him when he said we weren't using port first lol...so he met Andrew and I in the hall with a brown paper bag...I thought I had a goodie...LOL UMMM A GOODIE OF ANALPRAM!!!! haha! He was like here are some free samples...this is the stuff Dr. Rider prescribed you. So I accepted nicely and then he said ok...blood time. So he followed in there and I was grr. So he was writing check and the lady was getting my blood out of the evil arm that is destroyed GOOD! :) I told him he was my good luck charm and asked him to come every time...Andrew laughed, and Dr. Rod said "umm...no I don't think so!" He gave me my check Andrew and I told him bye and I gave him his big hug that he always deserves! :) So we left! I felt so much better talking to him, because he doesn't sugar coat ANYTHING! HE IS HONEST!!!!!! Thank you Lord for blessing me with an honest doctor and for helping our relationship to where it is today!

So Andrew and I went to eat...I ate...got sick and threw up in my napkin...wont be eating at that place for probably a few years! That's the evil thing about Crohn's...when something makes you sick...you don't want to eat it for a LOOOONG time...no matter if its chocolate cake or pizza!

So we went to his apartment and finished moving his stuff then headed home! Twas a long day/kind of sad day and we were both POOPED!

I'm sorry it took so long to write, but I have been trying to just rest, been sick, and just junk! Thank you all for everything! If there are errors just overlook them because this was SO MUCH!

Here are a few pictures from us at the beach! :) :)

me with my grandparents at the pavilion

andrew with the gradparents :)

Andrew & I at the beach :) I got a purplebathing suit because Purple = Crohn's Colorand our team is PURPLE HEARTS! :)

Jamie! I cannot tell you how much happiness your words bring to me! You are such an AMAZING friend! Thank you ALWAYS for your sweet words, love, and again awesome friendship! I love you so much and I really am going to try to work hard on trying to not worry about others. Thank you for truly understanding what I'm going through! I LOVE YOU! and ummm...CANNOT WAIT TO SEE YOU! :)

"He's Still Working On Me" A Little Bit About Little Me

I created this blog to tell MY story to anyone and everyone that God desires.

Age 6: I accepted Jesus Christ as my Lord and Savior. I was introduced to my first love, my strength, and my best friend. My life changed!

Age 18: I met the one my heart desires. Andrew James Hope. I was introduced to my companion, my confidant, and my soul mate. My life changed!

Age 21: I was diagnosed with an incurable disease. Crohns disease. I was introduced to pain, decisions I never thought I would have to make,
and something I would never be able to rid of. My life changed!

These are three key points in my life that have added to the foundation of who I am today. Briefly I will tell you that my Crohns is very specific in the sense that it is not like all the other Crohns cases. My case is almost to the point of being termed untreatable; therefore, physically I am in pain and mentally/emotionally I am exhausted. So to say things are hard right now is an understatement.

However! I AM receiving blessings daily! God is seeing me through this as well as Andrew, my family and my friends!

*If you are a follower of my blog and you are suffering with a disease that needs more awareness, leave me a comment and let me know! We will place your ribbon, disease, and name on the wall! God gives each of us a journey! Everyone's journey in life is different! Let's bring awareness to these terrible diseases, disorders, syndromes, etc. and ultimately together FIND THE CURES! God Bless!